What Living with Factor V Leiden Taught Me About Life and the Importance of Embracing Every Moment
In Recognition of Blood Clot Awareness Month
In 2003, when I was 16, I almost lost my mother to multiple deep vein thromboses (DVTs).
She had been having issues with pain around her knee for weeks, but brushed it off and continued working around the clock, as she usually did (I get that from her).
Over the course of a few weeks, her pain increased to the point that I was holding her up while trying to grocery shop. One of my high school friends was with me and we both decided that it was time to get her to the hospital. Tears in her eyes as she gritted through pain, she finally said, “Ok.”
We got her in the car and rushed to the ER. Her leg was swollen around the ankle and I honestly don’t know how she could push through the pain of it all for so long.
The technician ordered an immediate ultrasound. I’ll never forget the look on the technician’s face. She said, “Do NOT get off this table. Do NOT move.” She ran out to get a doctor.
Moments later, as my friend and I sat with my mom, the doctor came in and said, “I’m sorry, but you aren’t leaving today. You need surgery. Now."
Mom had multiple clots behind he knee and around her ankle. The doctor was able to remove the largest ones in her upper leg, but the rest needed to dissolve in the ICU.
It would be 2 weeks of my mom in ICU, 4 days total in an induced coma while I stayed with my older brother, calling the hospital every few hours to check on her, taking turns around the clock.
I remember being terrified… I really had never been away from my mom for more than a couple days up to the point. I was homeschooled in an accelerated concurrent enrollment program and was already taking college classes at the time, but at that moment, life stopped. I never would have been able to do any of it if it wasn’t for her. She was my cheerleader, my hype person, my rock… hell, she still is today. She taught me what it meant to love unconditionally. I didn’t know how I would survive without her.
Flash forward… by a miracle, two weeks later, she made it. An amazing hematologist (who was more like a friend by the time he passed away several years later) ordered the genetic testing for Factor V Leiden, which was still new at the time, and it was positive.
Immediately following the diagnosis, the hematologist asked to get me tested since I had been complaining about migraines ever since starting on birth control a few months prior. Not surprisingly, it was positive as well and I was taken off the birth control immediately.
After my mom was released, it was a long road to go for her. The damage to her leg was done and she needed rehab to help her gain strength and walk again.
We also had to start learning how to prevent this from happening to her again, and what this meant for me as I grew and became more at risk for clots.
She is one of the lucky ones to survive such an extreme case of blood clots. We suspect a small injury triggered them, but really never found out the actual cause. We do know that once the body was triggered, it would be more likely to produce clots in the future, which meant life-long treatment with anticoagulants and blood tests on a weekly/monthly basis.
Life can change so fast…One moment, my mom was feeling unwell, and the next, I was rushing her to the hospital, not knowing if she would survive. I remember gripping the steering wheel so tightly that my knuckles turned white, praying that she would make it through. The days that followed were some of the longest and most terrifying of my life.
That experience changed me forever. It made me painfully aware of how fragile life is, how quickly things can shift from normal to catastrophic. But it also planted the seed of something deeper—an unshakable determination to live fully, the importance of health, and to never take a single moment for granted. The experience in many ways, made me who I am today… determined, driven, and filled with a need to never allow an opportunity or experience to pass me by.
What is Factor V Leiden?
Factor V Leiden is a genetic mutation that increases the risk of abnormal blood clotting, particularly deep vein thrombosis (DVT) and pulmonary embolism (PE). According to the National Blood Clot Alliance,
“Factor V Leiden, named after the city in the Netherlands where it was first described, is a variant of the normal clotting factor V. The gene for factor V Leiden differs from the gene for normal factor V by a single nucleotide (nucleotides are the building blocks of DNA). As a result, it produces a protein that differs by one amino acid (amino acids are the building blocks for proteins) from normal factor V. While factor V Leiden is completely normal in terms of its ability to prevent bleeding, the one amino acid difference makes factor V Leiden resistant to being degraded or inactivated by protein C and protein S. Consequently, factor V Leiden lingers in the circulation longer and, therefore, contributes to the formation of blood clots.”
Who is Affected?
People who inherit one copy of the Factor V Leiden gene (heterozygous) have a 3 - 10 times higher risk of developing deep vein thrombosis (DVT) or pulmonary embolism (PE). Those who inherit two copies of the gene (homozygous) face an even greater risk — 80 - 100 times higher than individuals without the mutation. Among individuals of Northern European ancestry with a genetic predisposition for blood clotting disorders, studies show that 20 to 40% carry the Factor V Leiden mutation. Before this mutation was identified, inherited clotting disorders could only explain less than 10% of thrombosis cases.
In the United States, Factor V Leiden is most commonly found in individuals of European ancestry, affecting approximately 5% of this population. It is present in about 2% of individuals with African, Hispanic, and Native American ancestry, while it is less than 1% among those of Asian ancestry.
While many people with Factor V Leiden go their entire lives without major complications, others—like my mother—face life-threatening clotting events.
The condition doesn’t necessarily shorten life expectancy if managed well, but it does require vigilance. Blood thinners, lifestyle modifications, and regular monitoring become crucial, and things like long-haul flights, dehydration, pregnancy, and surgery come with increased risks. There are also specific medications and supplements that can also increase the risk of clotting.
For example, estrogen, often found in hormonal medications such as birth control, increases the risk of blood clotting for those with the mutation.
Pregnancy, Surgery, and Blood Thinners: Navigating Life with Factor V Leiden
Living with Factor V Leiden means I can’t afford to be careless with my health—especially during high-risk situations like pregnancy and surgery. During all three of my pregnancies, I had to take Lovenox, a blood thinner injected into my abdomen every single day and for 6 weeks post-partum, to prevent dangerous clotting. Pregnancy naturally increases the risk of blood clots, and with Factor V Leiden, that risk is multiplied. Skipping an injection wasn’t an option—I had to protect both myself and my babies.
Even today, anytime I undergo surgery, I must take blood thinners afterward to reduce my risk of post-operative clotting. Surgery itself increases the risk of DVTs, and my condition makes me even more vulnerable. It’s a delicate balance—too much thinning, and I risk excessive bleeding; too little, and a clot could form. It’s a reality I have to manage, but one that has only reinforced my commitment to taking care of myself.
Embracing Health, Embracing Life
After my mother’s ordeal, I knew that I, too, had Factor V Leiden. Instead of letting it terrify me, I used it as motivation. I didn’t want to live in fear of my body betraying me—I wanted to give it every possible advantage. I committed to fitness, not just for the sake of aesthetics, but as a means of survival. Exercise helps keep circulation strong, reduces the risk of clots, and makes me feel empowered in my own skin.
Beyond that, Factor V Leiden taught me how precious time is. I refuse to live passively, waiting for "someday."
I travel, I create, I push myself outside of my comfort zone because I know that nothing is guaranteed. I take risks—not reckless ones, but the kind that fill my life with wonder.
And frankly, I do it for my kids. I want them to be informed and know there are things we can do to help prevent clotting episodes throughout our lives.
A Deep Desire to See the World and Take Every Opportunity
Knowing that my body could betray me at any moment has made me fearless in the best possible way. I say yes more often than I say no because I never want to look back and regret the things I didn’t do.
Travel, in particular, has become a core part of my life. I want to see the world—not just skim the surface, but immerse myself in it, experience it deeply. I want to stand on mountaintops, wander through ancient temples, eat unfamiliar foods in bustling street markets, and collect memories that no one can ever take from me.
Every time I board a plane, I take precautions: I move around frequently, I stay hydrated, and I keep emergency medication with me. I’m aware of the risks, but I refuse to let them stop me. If anything, Factor V Leiden has made me appreciate the ability to move, to explore, to chase experiences that make my heart race.
It has also given me the courage to take on new opportunities—ones that I might have shied away from in another life. Whether it’s launching a new creative project, stepping in front of the camera in elaborate costumes, or sharing my voice in ways that might make others nervous, I remind myself: You don’t know how much time you have, so don’t waste it worrying.
Final Thoughts: A Life Lived Fully
Looking back, that night when I drove my mother to the hospital was a defining moment. It was terrifying, but it also gave me clarity: life is fragile, but that fragility makes it precious. Factor V Leiden isn’t a limitation for me—it’s a reminder to stay strong, stay present, and embrace every opportunity with open arms.
I don’t want to live a life of “what ifs.” I want to squeeze every drop out of this existence, to experience the magic of being alive, to say yes to adventure and no to hesitation.
We don’t always get to choose the challenges we face, but we do get to choose how we respond. I choose to live boldly. I choose to take care of my body. And I choose to savor every second, because every moment—every heartbeat—is a gift.
March: Blood Clot Awareness Month—A Time to Educate and Advocate
This article is more than just a personal reflection—it's also part of a larger mission. March is Blood Clot Awareness Month, a time dedicated to educating people about the dangers of clotting disorders like Factor V Leiden, deep vein thrombosis (DVT), and pulmonary embolism (PE). For many, blood clots are something they don’t think about until it’s too late. Awareness can literally save lives.
Blood clots are often called the "silent killer" because they can strike suddenly and with little warning. In the U.S. alone, 900,000 people are affected by blood clots each year, and approximately 100,000 die from clot-related complications.
That’s more than breast cancer, AIDS, and car accidents combined. But here’s the hopeful part: many of these cases are preventable with the right knowledge and early intervention.
I share this story not just for myself, but for anyone who may be at risk and not even realize it. I want people to know the symptoms of blood clots:
Swelling, usually in one leg or arm
Unexplained pain or tenderness
Red or discolored skin
Warmth in the affected area
Sudden shortness of breath (a warning sign of pulmonary embolism)
I also want people to know that if they have a family history of clotting disorders, they should talk to their doctor about genetic testing for Factor V Leiden or other clotting mutations.
Simple lifestyle changes—like staying active, drinking enough water, and avoiding prolonged periods of sitting—can make a big difference in clot prevention.
Blood Clot Awareness Month is also about breaking misconceptions. So many people assume blood clots only happen to the elderly or those with major health conditions, but they can happen to anyone—young, fit, and seemingly healthy individuals included. I know because I’ve lived it. My mother was lucky to survive her multiple DVTs. Many others aren’t as fortunate.
That’s why I take this month as an opportunity to speak up, to raise awareness, and to encourage others to take their health seriously.
Knowledge is power, and in the case of blood clots, knowledge is life-saving.
So, if this article resonates with you, I encourage you to share it, talk to your loved ones, and help spread awareness. You never know whose life you might change simply by starting the conversation.
Links & Resources
National Blood Clot Alliance: Factor V Leiden Resources
American Factor V Leiden Association
Mayo Clinic - Factor V Leiden Diagnosis and Treatment information
The American Blood Clot Association
ABOUT TIFFANY CHAN, Ed.D., CSE, MA:
Tiffany Chan, (stage names: Dr. K or Kipani Heart), seamlessly blends her creative passions with a deep commitment to holistic sexual education. Based in Los Angeles, Tiffany is a Board-Certified Sexologist and Intimacy Consultant specializing in kink education, D/s dynamics, and holistic living, as well as popular model and influencer. She holds a Doctorate in Education, a Master’s in English Literature, and advanced certifications in sexology, making her approach to intimacy and empowerment both uniquely informed and empathetic.
Chan’s academic background is complemented by her experience as a creative writer, digital content creator, and certified fitness trainer. She has published work in scholarly journals such as American Popular Culture and Men’s Health and is actively involved in research with The Alternative Sexual Health Research Alliance (TASHRA). As the host of the popular podcast The Submissive Next Door, Chan delves into diverse topics ranging from BDSM to consent and alternative lifestyles, sharing eye-opening insights with her guests.
Chan is also the founder and editor of Artistic Edge Magazine, where she merges her love for the arts with her dedication to sexual education. A staunch advocate for diversity, inclusion and informed consent, she is a member of the National Coalition for Sexual Freedom (NCSF) and the Society for the Scientific Study of Sexuality (SSSS). She is a recognized leader in the alternative lifestyle community as well, offering workshops and consultations that empower individuals to explore their identities in safe, consensual environments.
To learn more about Tiffany Chan, visit TiffanyChanOfficial.com | Beacons.ai/kipani.
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